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Newbie hoping for some advice - Carers UK Forum

Newbie hoping for some advice

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Hi - my name is Anita and I live in Surrey. I am a long distant carer for both of my parents who live in Sussex.
My daughter (plus her 2 little children) and I go down to my parents every weekend to do all necessary jobs i.e cleaning, washing, gardening, shopping, cooking etc and any other support we can provide in a short space of time.
My father has secondary bone cancer - he is still mobile but dementia is beginning to set in. My mother has fluid on the brain and does not have any mobility. We have a care team going in 4 times a day to care for my mother, using a hoist. My father looks after her at all other times. We always leave food for them to "pop" into the microwave during the week and a timetable to help him cope. Anything that is worrying him we leave a list for him to read to reassure him that these things are being dealt with but his pride often does not allow him to read this so he ends up even more confused and worried.
We get frequent phone calls from him and as fast as we reassure him that everything is in hand, the whole process will be repeated over and over again.
Ultimately my mother is not getting the care she needs and my father needs help himself. Having spoken to the care team recently they have told us that they will have to inform social services of the situation and withdraw their care. They will not do this without giving us prior warning within a reasonable amount of time.
Having broached this subject with my father I, understandably, was greeted with outrage and complete denial that they were not coping. The thought of being taken out of their home and away from their devoted dog is like putting a gun to their head, one which my father will not accept and I doubt anyone will be able to remove him or my mother from their home.
My daughter and I obvioulsy find this very distressing as we totally understand where they are coming from and feel what right has anyone to take them out of their home, yet they are not coping and the situation is bordering on danger and neglect for my mother.
Most of the time my mother is not aware of what is going on - sometimes she pleads with me to take her away and other times she too does not want to leave her home either. Most of all she wants her mother.
We have been caring for them now for over 2 years but this year the deterioation has been rapid. What we would really like to know is are there any services out there that would look afer them both in their own home?
The carers that go in at the moment are first class but the management have thrown up problem after problem from the beginning when things were a lot easier, even though they said they would look after my mother all the way through to the end. Now they are saying they can no longer do this as I suppose they have to cover their own backs for some reason or another. Having employed them privately to help my parents (they are only employed to look after my mum), to take the pressure off my father as well as us they have in fact caused us even more pressure with constant phone calls about various things. I am sure health and safety come into all this but it does seem over the top.
Does anyone have any suggestions or advice how 2 people who have been together for 60yrs can stay in their own home and be cared for? Or is the only solution now left to them is to go in a home which I will never be able to get my father to leave his home and I fear that no-one will have any hope in removing him?
I hope I am making sense here - I am afraid today has been fairly traumatic and I am very tired!
Hi anita and welcome to the forum.

This is a dreadful situation to find yourself in the middle of and I can fully appreciate your concerns. 4 years ago my Mum was diagnosed with Alzheimer's but 2 years ago I had to shut up my home, pack a suitcase and move in with her to care for her 24/7. We are currently looking for a residential care home for her as I cannot continue to try and run two homes !

You ask if there are any services for people to be cared for in their own homes - there are plenty of care companies that will provide 24/7 care at home, although I can't recommend any one company over another, but you could start looking here:

Care at Home Today is an online home care advice
directory of UK home and domiciliary care agencies
and services.

24 hour Live-in Care or Hourly Care
Companionship and Household Care
Palliative and Respite Home Care
Nursing or Residential Home Care
Parkinsons and Dementia Home Care

In general I believe the fees work out the same or a bit less than a care home situation. I shall be interested to hear how you get on.
Welcome to the forum. I hope you can find some support and some help through your difficulties.
Hi Anita and welcome to the forum.

I don't have much advice to offer as my caring situation is different and we're in Scotland where care / costings etc are different but I'm sure you'll get some much needed advice/support here.

Take care

Depending on how much SS are paying, you could possibly look at receiving the money in the form of a Direct Payment or Personal Budget and think about employing someone privately that will live in.
Hi Anita and welcome Image